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Thursday, October 2, 2014

What Does Down Syndrome Awareness Mean For Carter And Eli

Something in the dynamic of our day-to-day has slowly shifted over the past few months. Something magical is being created here at our house. Something I have dreamed about and hoped for but was too afraid to breath into the air lest it was asking for too much. But it is here. And it is happening. What is this magic? Independent play times 3.

We have slowly emerged from new baby survival mode into a chaotic sort of organized, awesome, bonding, heart-bursting-with-love family time. Eli used to require me every second of every day. Now? He wants to play with the big kids. Constantly. So they cluster themselves into the same room (or corner of the room) and amuse themselves amongst themselves. The way they look at each other, laugh together, pass toys between them, and playfully tackle each other- I cannot get over the bond that grows stronger by the day between the 3 of them.

I love, love, LOVE this. Sure, there are moments of bickering and crying. And I always keep a very close watch on them in case someone is playing too roughly with the baby. But the general overall census in my house right now is of noisy play full of laughter and camaraderie. Times 3.

This morning I was folding laundry in the Living Room while the baby had play time in the crib in the boys' room (this is not where he sleeps- just a point of containment when necessary.) Addison climbed into the crib to read her book to the baby and Carter planted himself on the train table right next to the crib to read his own book. I heard piles of giggles rolling out of the room, so I went to investigate. Carter yelled "The kids are in my room, Mommy!" They were just- being together. Reading books, nestling into each other (Carter climbed in the crib too), grabbing feet, laughing when it tickled, sharing toys- they were playing so beautifully together.

As I stood there, a draped, unfolded towel in my hands, I really thought my heart was going to explode. I am so thankful that they have each other. And I am so thankful that I get to be their mother. But this got me thinking about Down syndrome month. Watching the boys play with Addison- it made me think- what does Down syndrome awareness month mean to Carter and Eli? What does October mean to the two boys playing so innocently alongside the little girl with an extra chromosome?

With a smile, I realized- nothing. It means absolutely nothing to them. Addison isn't a poster child or a cause or something they next to "accept." She is their equal; their playmate; their sister; the one who successfully pulls off heists with them. Addison isn't on an inspirational poster in their room. She is the one who helps them tear whatever mommy puts up on their walls- off.

When I thought about how they all love each other- without them even realizing that this could be called "love", I felt a pang of I don't even know what. Jealousy? Happiness? They don't love Addison in spite of Down syndrome. They love Addison. Period. Down syndrome is a part of who she is- a part of who they have always known her as. They love Down syndrome without even knowing that its a thing. A "thing" that someone else might fear. A "thing" that some would say will come back later in life to be a burden. Carter and Eli don't care about any of the stigmas or naysayers. They only care about their sister. The one who lives in the pink room next to theirs. The one who has the glasses they like to steal. The one who rides in the blue wagon between their respective red and orange ones. The one who might share cookies with them or steal them depending on her mood. The one who has the best laugh. The one who they beg for the minute after we drop her of at school. The one who equally joins in the "climb on Daddy!" routine that happens as soon as Daddy gets home.

I don't know if this will someday change. I don't know if middle school and high school will be extra difficult for them because Addison is their sister. I just don't know. But I do know this- these boys love her, wrestle her down, steal her books, hold her hand, eat their meals alongside her, splash in the bath with her, give her hugs like no one's business. My 3 children are not 2 typically developing and 1with Down syndrome that they somehow put up with. My 3 children are 3 children. Equals. Friends. Siblings. There is no distinction between them. They tumble through their days having constant moments of sibling bond that know nothing of Down syndrome or what it's "supposed" to mean.

I wish it could be like this always.

Addison just started taking the bus home on Tuesdays and Thursdays. Someone asked me "You mean a short bus?" and my heart sank just from the sound of those words. In my mind those words have such a stigma and hurt to hear. Does Carter care that Addison's bus is short? Not even a little bit. He runs beside me with so much excitement his entire body is shaking. "ADDISON IS GETTING OFF OF A BUS! A BUS MOMMY!" LOOK A BUS! CARTER WANT TO RIDE ON BUS TOO!" He wouldn't care if the bus was short, long, fat, skinny, round, or purple. All he cares about is that it stops at OUR house and HIS sister gets off of it.

After bus drop off today, we were all jumping on the trampoline together. Carter jumped high- while running big circles around me and the baby- and Addison. She jumped too (or as she said "BOUNCE!") but nowhere near as vigorously as he did. Carter smiled at her and just kept doing his thing while she did hers. He doesn't care that she can't jump as high as he can. He was speaking all sorts of words, describing to me his jumping and what he saw and then telling me when he got hot and thirsty as a result of his workout. All Addison said was "BOUNCE!" over and over again. Did he care that she wasn't talking as much as he was? Nope.

(I will say, the one thing he REALLY cares about is that when she breaks rules that she gets punished with the EXACT same discipline and consistency as he does. He tattles on her often and yells with glee when she gets sent to time out.) But back to the issue at hand...

When will he realize that her bus is 'short'? That she isn't jumping as high as him because she can't? That she is quiet because she struggles to talk? And talks "different"? That she isn't like other sisters? That she won't always be able to keep up with him? That she has Down syndrome? And Eli? Will he care the same as Carter or in different ways?

I don't know. But I think when the brothers realize that their sister is and always be "different", they will have years and years of loving behind them already. They will accept the label along with the person they already know. Addison will define the label for them- not the other way around. "Down syndrome?" will mean "sister" and "Down syndrome awareness month" will mean "Month month." Aware of what? Down syndrome is their normal.

I'm jealous of my boys. I think that growing up with Addison will teach them a lot about compassion, kindness, and patience that they wouldn't get otherwise. Things that they will learn without even realizing it. Having Addison as their sister will make them into better people. I'm convinced of it. Sometimes I add in my mind "if I do this mother thing right." But then I think- it's Addison. Even if I totally screw this up, I think she is quite capable of teaching this to her brothers all on her own.

As much as these toddler/preschool years are incredibly difficult, I see such hidden treasure in the innocence here. The ability to accept each other with no reservations- no fear. The ability to play without modifications, labels, or judgement. Sometimes I want to freeze in this phase forever- where Addison is in a cocoon of love, mushed between her brothers who don't know any better than to just love her- fiercely. Her entire world is a safety net where she is treated like the princess that she is. Her existence doesn't go beyond who we define her to be- a beautiful little girl. When Carter grabs for her hand, when Eli swats at her hair, when brotherly kisses are tenderly pressed against her cheek, when chubby arms reach for her, when lips turn upward in a smile when she is around, when laughter abounds in response to her own- she is their sister. Nothing else.

Every day I pray for my boys to grow up to be men who will continue to love her and achieve a rare kind of gentleness as a result. Who continue to protect her- even when they might look uncool or strange themselves because of it. Who defy labels and judgement and continue to love- fiercely because she is their sister. Not because it is their responsibility or burden or sad lot in life- because they love her so deeply they can't possibly imagine any other way of life- in the happiest, most joyful sort of way possible. I pray for Carter and Eli to continue to see Down syndrome awareness month as "Month month" because it doesn't phase them. It is a part of their sister and a part of their lives. It isn't necessarily good. It isn't bad. It just is. I pray that they won't let stigmas of the world around them recolor the things that their childhood has painted so beautiful for them- minute-by-minute, pantry raid-by-pantry raid #chocolatehunt, afternoon of play-by-afternoon of play. They are the same. They are 3 people. They are equals.

I had to learn all of this the hard way. I had stigmas ripped unmercifully from me and a label thrust upon our family that I had always associated with sadness and grief. I had to take the difficult path to learn what love really is. I had to cry long and bitter tears over the loss of the life I thought I wanted before I realized that the one I got was so much better. I had to picture a gloomy future before I started living my actual future full of happiness and joy because of Down syndrome. My boys? They were born into acceptance. They never have to go through what I went through. They were born loving their sister. I am so thankful for this. I think this is one of the greatest gifts Addison has given them- not just learning to accept difference- learning to LOVE difference. I hope this never changes. Loving difference has changed my life dramatically. I can only imagine how much better it would have been had I learned this so much earlier and what this will mean for my boys to have this gift from day 1 of life.

I love these children- unconditionally. They love each other- unconditionally. (And of course Daddy is in all of these mixes as well.) I love that they have each other- that we are a family. I treasure these sibling bonding moments more than I can even express. I am taking mental snapshots and tucking them away to bring back whenever I need to re-live the love that I am surrounded by right now.

What will this look like in 10, 15 years? I don't know. But we don't have to tackle that now. We only have to love today.